In 2007, supported by an extraordinary team of family, friends, and medical staff, I stomped the snot out of a nasty cancer that was on its way to killing me. I've since learned that the way I did it has a lot in common with the advice of the "e-patients" movement, so I've changed my blogger name from Patient Dave to e-Patient Dave.

Saturday, August 8, 2009

One aspect of patient empowerment is taking responsibility for your/our situations. In the new discipline of participatory medicine we talk about collaborative partnership with our providers (docs, nurses, all the professionals).

One doc, Stanley Feld, talks about "physicians as coaches, patients as players." Another well-known hotshot, Fast Company's "doctor of the future" Jay Parkinson, talks about being "the CEO" of your body - the one who makes the strategic decisions and assembles the team. (The CEO doesn't have the required expertise, but is responsible for acquiring it. The experts advise, but the CEO is responsible for using the advice.)

And in my view, one aspect of this is being responsible for the mental aspect: our attitude.

This comes to mind because tonight I ran across this, a journal entry from the start of my treatment:

DO YOU HAVE CANCER, OR DOES IT HAVE YOU?

If this question's new to you, think about it. When I first got the diagnosis, the cancer sure had me: I was at its mercy. Every change in my outlook came from outside me: it was something that seemed to happen to me, something over which I had no control.

I have a mental image for 'the cancer has me.' In that image, the cancer is like a big dog with a chew toy (me) in its jaws, shaking the daylights out of it and tossing it around.

The pivotal change came when I chose to get in action and do whatever I could, learn whatever I could. Mind you, who am I to know how to fight a cancer?? Do I know anything about the biology of cancer? No. But now my outlook is that I have a cancer in my life, and I'm doing what I can to manage it .... and I'm creating new ways to interact with it, beyond what others have thought of. (Your feedback here tells me that.)

I say it's vitally important that YOU realize what a difference this makes. Remember something I said back in February: citing a study, a nurse in my email group said 'If you're actively involved in creating your care, learning everything you can, and finding the best care available, then your outcome automatically moves to above the median.'

Paul Levy posted that on his blog 120 weeks ago. (A bit over two years, though it seems like ten.) His post drew an unhappy comment from someone anonymous:

This is the sort of American positivity that drives me nuts. Unless you're lucky enough to catch it early or have one of the curable ones, cancer will probably kill you in a few years. This is a time to put your affairs in order and do those things you always wanted to before you die, not be all positive and managerial.

In the prolog to my journal I cited Norman Cousins's great book Anatomy of an Illness, which chronicled how he used belly laughs, love, hope and faith in beating an unbeatable stomach cancer. His book starts:

That was thirty years ago, folks. Back then nobody knew the facts that today we call psycho neuro immunology. (Attitude [psych] measurably affects the nervous system [neuro] which measurably affects the immune system [immunology].)

Yes, folks, it's been shown that your attitude can affect your immune system. You gonna take responsibility for that?

There are so many ways to look at this: physiology, psychology, and sociological.

A good layman's book on the physiology is "Fatal Sequence" by Kevin Tracey.

A good book on the psychological is Groopman's "Anatomy of Hope".

Then, as an e-patient we need to be hypervigilant for bad doctors that label anything they don't understand "psychosomatic". This is dangerous ground. It can kill you.

A surgeon told me a doctor friend of his advised him (the surgeon was another doc's patient) that if you ever had any kind of psychological counseling, no matter how minor, you should lie, lie, lie and never disclose, because if you have anything the least bit complicated, many docs do the easiest thing and label it psychosomatic. You can be denied treatment for years.

A complex, multi-faceted problem. Always do what is best for your health.

I am a survivor of AML. I spent a total of 8 months in the hospital and I saw a lot of people come and go. Some had the "why me?" attitude and I saw many of them leave feet first. Others had a "can do" attitude, and although, obviously not all of them did well, I think more did than did not. I am convinced that you may not be able to cure your problem (still need medical intervention), but you can definitely make things worse by your attitude.